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A question that concerns most parents of disabled adults with high and complex needs (HCN) is: “What will happen to my child when I am no longer alive?” One of the factors that could assist these parents in securing a better future for their children beyond their own lifetime is timely succession planning. METHOD: Semi-structured interviews were conducted with 14 Aotearoa New Zealand parents and 18 Indian parents with a view to understanding their wishes and worries concerning the long-term care and well-being of their adult children with HCN. This article focuses on the parents’ views on their own role in succession planning. FINDINGS: Based on parents’ responses, six key components of succession planning were identified: preparing the child; preparing the informal network; sorting out the living arrangements; securing their financial future; creating a life plan and a training manual; and preparing the community. IMPLICATIONS: The study revealed that not all parents have the necessary skills, resources or even desires to engage in succession planning and hence it becomes crucial that professionals working in the social services sector provide appropriate support to these parents. KEYWORDS: high and complex needs; succession planning; disabled adults; parents of disabled children

aotearoa new zealand social work

“It’s like me leaving a manual of me behind”: Parents talk about succession planning of long-term care and support for their disabled adult children with high and complex needs